An Alternative approach to Stage IV Health and choices

that's life.. i haven't looked into it, but my Walgreens (pharmacy) offers shingles vaccines

Kaara,

I appreciate all of your comments and the thoughtful way you approach your health care. My question is how does this apply to stage IV? Are alternatives generalized across the bc spectrum? Stage IV seems like a very different animal than stage I.

Caryn

? Is anyone taking Avemar? I am considering adding this to my supplements. If anyone is taking this where are you getting it from and is 150 about the price you are paying for 1 month?

After I did my standard yr of chemo I did a vaccine to boost my T cells. I'm not actualy sure of the trial name but it was AE37 &GP2  trial.  This \trial was targeted for HER2+ and I did it for about 6 months. Very few side effects, very doable.. They would not give me exact numbers of what my T cells were to start with but they did tell me at the end of it that it almost doubled mine. About 6 months after the trial is when I was diagnosed with recurrence.  When I went to the Block Center in Sept. (about 8 months after recurrence) my T cells were right in normal range and at that time Herceptin and Navelbine had stopped working for me although we didn't know that yet.  Anyways, I highly recommend the vaccine trials, I think if it weren't for that and my supplements I probably would be in worse shape. 

Hope everyone is having a great day!!

ango74, sweetbean takes AveUltra. Maybe you can PM her.

exbrnxgrl, I think that just as breast cancer is many different diseases, stage 4 is as well. So many different mutations literally. I think in my case I can now relate more to a lower stage where diet and lifestyle changes could have more of an impact than Femara, particularly as I get further from menopause. I should put that in my biography so it's clear to all.

There seems to be so many vaccine trials going on. I suppose if we're dealing with so many types of bc....One method I read about uses immune cells from a healthy person:

http://www.sciencedaily.com/releases/2012/02/120203091815.htm

Ango74, I like AveUltra - everything that I have read is impressive.  I have also read good things about low-dose neltrexone and that is very inexpensive - about $30 a month.  You can get a prescription for it from a CAM-friendly MD.  I'm not advocating one in place of the other - do both if you can afford it.  I think the best price that I have seen is $140/month.  

exbrnxgrl, I don't know if you have had a chance to read the whole thread, but there is a lot of good info here.  That'slife has done a really good job with this thread.   I try to post about the alt treatments that impress me, esp ones that have helped Stage IV patients that I know. 

I'm taking low dose Naltrexone, and other than having some difficulty waking up in the middle of the night for a few weeks, it has had no other SE's.  The other one that my naturopath mentioned was Mistletoe or Iscador which comes from Germany and is an injectible.  It is more expensive...I think he said about $250 a month.  Last week I started on vitamin infusions...Myer's cocktail with some antioxidants, and glutathione given at the end right into the IV, along with some cancer additives.

sweetbean:  I tried taking melatonin once before and it made me dizzy.  Has anyone ever had that problem?  I would like to try it again because it helps with sleep as well. 

I did take it at night, but when I got up to go to the bathroom and went back to get into bed it triggered a bout of vertigo that I sometimes have.  It could have been coincidental, so I should probably try it again just to see what happens.

Heidihill:  Funny you should mention that.  I've had several episodes where I thought someone was trying to pull me out of the bed while I was sleeping and I was fighting with all my might to stop it.  I would try to move or cry out, but couldn't.  I would wake myself up and be ok, but it was weird!  I thought I was being visited by spirits or something.  This is a more reasonable explanation...thanks...I'm not crazy afterall:)  Who knew!  See what you learn on this site.

 I never turn the lights on in the middle of the night...if I do, then I might as well just stay up because I'm wide awake.  Better to fumble around in the dark and risk stubbing my toe!  I will, however, stop looking at my e mails before going to bed.  Good tip. 

Thank you Kaara and Sweetbean for the info. I will probably order Avemar next pay period, I have to get my Xeloda this week 346.00  

I've taken Melatonin for years, even before my bc dx. I found when I first started taking it I had the nightmares and the feeling of not being able to wake up. I guess I've gotten use to it.  I've had the worst problems with sleep through all the chemo and surgeries and have found it works better for me than most sleep aids.

I know everyone was talking about coconut oil a few pages back. I thought I would share this link, it's not bc related but coconut oil related. If you don't want to watch or can't I'll sum it up.  A doctor started giving it to her husband who has alzheimers and it seemed to stop his progression and even improved his memory.

http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS

My fil has pretty advanced alzheimers and my husband found this link.

For those of you who feel you need the seratonin boost at bedtime but do not do well with melatonin tablets, you might try drinking a small glass of tart cherry juice before bedtime.  It is a food source of naturally-occurring melatonin and might be easier for your system to handle.  It is also excellent for your joints and aches.  (There are various kinds of cherry juice on the market, so be sure the label says "tart cherry" -- it's made from Mountmorency cherries.)

Melatonin tablets do help me sleep but I stopped taking it last week because I felt like I was dancing around depression -- not there yet, just feeling a darker mood waiting around the corner. So for the time being, I am eliminating from my regimen anything that affects neurotransmitters so I can see where I really am.  Interestingly, I find I am now sleeping fine without it, whereas a year ago I was not.  Perhaps the body re-sets itself after you've taken it a while.  I am going to see how long I can go without it, while I work on protecting myself from the winter blues. I still have a little tart cherry juice as needed.

Hey lulubee, it just occurred to me thinking about the video that coconut oil taken internally could help you too with depression. It's possible our brains could use the ketones because glucose is being taken up by cancer cells. May not hurt to try it until the days get brighter. I'll be giving my family some too if it'll help ward off viruses and alzheimer's.

Heidi, good thought about the coconut oil and depression.  Sure worth a shot, huh?  I've been nibbling a little nub of it off the spoon at night when I use it for body moisturize, but I think I will start taking a larger spoonful in the morning instead -- should help with energy, too.  I just hope I don't pack on even more weight than I already have on anti-hormonals!  Golly bob, it has just got to stop creeping up. 

AA, you raise a great point about sunlight and melatonin.  A couple of years ago I purchased a "happy lamp" and I set it up in my bathroom so the bright light is about 18 inches from my eyes.  I turn it on first thing every morning when I put on makeup and fix my hair for the day (it really helps with putting on makeup -- a nice side benefit!).  That's about 20 minutes of super bright light first thing in the morning, and it seems like it has really helped re-set my circadian rhythms so I sleep better and feel better.

I have FAR less problems with Seasonal Affective Disorder symptoms than I used to suffer before I got the lamp and started taking lots of D3. 

So if glass blocks off the UVB rays and sun glasses do too.........what about regular glasses with plastic lenses?  Do I need to remove my regular glasses while in the sun to get the proper relay to the pineal gland?

Ango, what about contacts?

lulu, most of the contact brands have uv block in their lens also, soft ones that this. Usualy the box will say this. If you know what brand you are wearing I can find out if they don't list it on the box. Now gas perm lens a different story, I'm not sure but can find out.